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Managing clinically significant findings in research: the UK10K example.

Kaye J, Hurles M, Griffin H, Grewal J, Bobrow M, Timpson N, Smee C, Bolton P, Durbin R, Dyke S, Fitzpatrick D, Kennedy K, Kent A, Muddyman D, Muntoni F, Raymond LF, Semple R, Spector T; UK 10K..

Eur J Hum Genet. 2014 Sep;22(9):1100-4. doi: 10.1038/ejhg.2013.290.


'Pop-Up' Governance: developing internal governance frameworks for consortia: the example of UK10K.

Kaye J, Muddyman D, Smee C, Kennedy K, Bell J; UK10K..

Life Sci Soc Policy. 2015;11:10. doi: 10.1186/s40504-015-0028-9.


Ethical and legal implications of whole genome and whole exome sequencing in African populations.

Wright GE, Koornhof PG, Adeyemo AA, Tiffin N.

BMC Med Ethics. 2013 May 28;14:21. doi: 10.1186/1472-6939-14-21.


An implementation framework for the feedback of individual research results and incidental findings in research.

Thorogood A, Joly Y, Knoppers BM, Nilsson T, Metrakos P, Lazaris A, Salman A.

BMC Med Ethics. 2014 Dec 23;15:88. doi: 10.1186/1472-6939-15-88.


Broadening research consent in the era of genome-informed medicine.

Kronenthal C, Delaney SK, Christman MF.

Genet Med. 2012 Apr;14(4):432-6. doi: 10.1038/gim.2011.76.


Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium.

Berg JS, Amendola LM, Eng C, Van Allen E, Gray SW, Wagle N, Rehm HL, DeChene ET, Dulik MC, Hisama FM, Burke W, Spinner NB, Garraway L, Green RC, Plon S, Evans JP, Jarvik GP; Members of the CSER Actionability and Return of Results Working Group..

Genet Med. 2013 Nov;15(11):860-7. doi: 10.1038/gim.2013.133. Review. Erratum in: Genet Med. 2014 Feb;16(2):203.


Managing incidental findings in human subjects research: analysis and recommendations.

Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho MK, Clayton EW, Fletcher JG, Georgieff MK, Hammerschmidt D, Hudson K, Illes J, Kapur V, Keane MA, Koenig BA, Leroy BS, McFarland EG, Paradise J, Parker LS, Terry SF, Van Ness B, Wilfond BS.

J Law Med Ethics. 2008 Summer;36(2):219-48, 211. doi: 10.1111/j.1748-720X.2008.00266.x. Review.


Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.

Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME, Wright CF, Parker M; DDD study..

Eur J Hum Genet. 2016 Jan;24(1):21-9. doi: 10.1038/ejhg.2015.58.


Should genetic findings from genome research be reported back to the participants?

Steinsbekk KS, Solberg B.

Tidsskr Nor Laegeforen. 2012 Oct 16;132(19):2190-3. Review. English, Norwegian.


Managing incidental findings and research results in genomic research involving biobanks and archived data sets.

Wolf SM, Crock BN, Van Ness B, Lawrenz F, Kahn JP, Beskow LM, Cho MK, Christman MF, Green RC, Hall R, Illes J, Keane M, Knoppers BM, Koenig BA, Kohane IS, Leroy B, Maschke KJ, McGeveran W, Ossorio P, Parker LS, Petersen GM, Richardson HS, Scott JA, Terry SF, Wilfond BS, Wolf WA.

Genet Med. 2012 Apr;14(4):361-84. doi: 10.1038/gim.2012.23.


The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists.

Boycott K, Hartley T, Adam S, Bernier F, Chong K, Fernandez BA, Friedman JM, Geraghty MT, Hume S, Knoppers BM, Laberge AM, Majewski J, Mendoza-Londono R, Meyn MS, Michaud JL, Nelson TN, Richer J, Sadikovic B, Skidmore DL, Stockley T, Taylor S, van Karnebeek C, Zawati MH, Lauzon J, Armour CM; Canadian College of Medical Geneticists..

J Med Genet. 2015 Jul;52(7):431-7. doi: 10.1136/jmedgenet-2015-103144.


Suitability of customer relationship management systems for the management of study participants in biomedical research.

Schwanke J, Rienhoff O, Schulze TG, Nussbeck SY.

Methods Inf Med. 2013;52(4):340-50. doi: 10.3414/ME12-02-0012.


Exploring concordance and discordance for return of incidental findings from clinical sequencing.

Green RC, Berg JS, Berry GT, Biesecker LG, Dimmock DP, Evans JP, Grody WW, Hegde MR, Kalia S, Korf BR, Krantz I, McGuire AL, Miller DT, Murray MF, Nussbaum RL, Plon SE, Rehm HL, Jacob HJ.

Genet Med. 2012 Apr;14(4):405-10. doi: 10.1038/gim.2012.21.


Managing outside information: creating an internal plan for externally generated information.

Kohn D.

J AHIMA. 2010 Mar;81(3):44-5. No abstract available.


Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, Evans BJ, Evans JP, Fullerton SM, Gallego CJ, Garrison NA, Gray SW, Holm IA, Kullo IJ, Lehmann LS, McCarty C, Prows CA, Rehm HL, Sharp RR, Salama J, Sanderson S, Van Driest SL, Williams MS, Wolf SM, Wolf WA; eMERGE Act-ROR Committee and CERC Committee.; CSER Act-ROR Working Group., Burke W.

Am J Hum Genet. 2014 Jun 5;94(6):818-26. doi: 10.1016/j.ajhg.2014.04.009.


Perspectives of clinical genetics professionals toward genome sequencing and incidental findings: a survey study.

Lemke AA, Bick D, Dimmock D, Simpson P, Veith R.

Clin Genet. 2013 Sep;84(3):230-6. doi: 10.1111/cge.12060.


Research in the wild.

Van Hoyweghen I, Penders B.

Nature. 2007 Nov 22;450(7169):478. No abstract available.


Organizational challenges in clinical genomic research.

Altshuler JS, Altshuler D.

Nature. 2004 May 27;429(6990):478-81.

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